Confused, In many people with lupus, UV rays worsen an already aberrant immune response. With lupus, the immune system is churning out damaging autoantibodies. (People aren't SUPPOSED to produce antibodies to their own bodies.) So putting an immune system into overdrive means creating more damaging substances that can harm you internally (organs, etc.)

Some people also have *external* signs = lupus rashes, that appear or worsen after sun exposure. Certain types of these rashes can cause permanent hair loss and scarring. While ugly & maybe disfiguring, skin damage alone isn't as bad as internal damage. But since rashes can be a outward sign that internal damage might ALSO be occurring, they can't be ignored.

This is why the various lupus medications all modify or flat-out suppress the immune response, so less "bad" is created by your immune system. And it's why people with lupus avoid sun---the risk is just too high. For someone with, say, kidney involvement, the consequences could be so profound.

The sun doesn't ever bother me. I once was on a medication though that said not to have prolonged sun exposure. Only one time did the sun ever cause a problem for me. I got quite a sunburn on my arms and for two weeks it felt like I had a terrible rash on my arms...itched terribly but I didn't get any bumps or redness. That was the only problem I've ever had. I guess I'm the exception to the rule though.

I have lupus and the sun bothers me more and more as the years go by. I now where sunglasses even in the car in bright sunlight as it now only takes a little bit of sun to set off my lupus and make it worse. Please be careful as sometimes it may not seem like it is causing a problem, but mine is getting worse and worse. I am to the point where just a change in temperature sets off my immune problems. Hope this helps

Confused, There's a "sticky post" ( = permanent post) with the ACR criteria to classify systemic lupus, near the top of the thread list. In it, you'll see "photosensitivity" is only 1 criteria of the 11 listed. To be Dx'ed with systemic lupus, you need to match any 4 of those 11, sometime in your lifetime (but not necessarily all at once).

This list also illustrates that photosensitivity is not "required". Why? You could have some OTHER 4, excluding photosensitivity, but still have SLE. Which is pretty much what the responses so far are saying, actually, that some are photosensitive but some aren't. (I am, horribly ).

FYI, there are "lesser" forms of lupus where you don't meet "4" on this ACR classification list, like SCLE (may meet 4, but maybe not), or DLE (typically fewer than 4). You could be photosensitive with these forms, too.